New Daily Persistent Headache

Posted by llee @llee1, Dec 1, 2011

I was diagnosed with New Daily Persistent Headaches at Johns Hopkins headache clinic in Baltimore last August. I am hoping to find more information on these kinds of headaches. I have found very little actual research information on them, and some of the information I have found is inaccurate.

The first neuro I went to must not have been familiar with this type of headache, as I have all of the symtoms, but he never diagnosed me with NDPH. For those of you unfamiliar with this type of headache, let me tell you what I do know. First of all let me say that I got a headache the first week in June in 2010, and it has never gone away. It does not always hurt in the same place, or in the same way, or to the same extent. That makes it nearly impossible to describe to a doctor because it sounds crazy. I kept apologizing to my first neuro for not being helpful when he asked questions, and I gave him this bizaare set of answers. Finally being correctly diagnosed was huge to me. At least I knew what I had and that there were other people with this type of headache.

The headache pain goes from moderate to severe; I often have migranous headaches but migraine meds do not phase NDPH. NDHP are not migraines. It would be nice to have migraines where at least most people have some type of success with medication. I have easily tried 40 different medications. My doc at Johns Hopkins said that this is the most difficult type of headache to treat; less than half of all sufferers ever find any kind of medication that will ease the pain. For bad and really bad days I have to take oxycodone or apply a fentanyl patch. Not only are these substances highly addictive but they also cause rebound headaches which are far worse than the orginal one was. Most days (and nights) I just try to get through them. I don’t really have any options.
I was an English teacher. Last year I had to take 6 months off. I went back this year, but I only made it though the first quarter. I am on short-term disability now with no option to return to my job of 29 years.

I would love to see discussion of this type of headaches on the board! I also wanted to post this in case anyone who reads this may be suffereing from this type of headache. To be classified at NDPH, the headaches must have been continual for at least a 3 month period- no time at all headache free. They say that 80% of people with these headaches can tell you the exact time they began. Have you been give a lot of different medications and none of them phased your pain? It seems like a lot of doctors don’t know anything about this headache. Both my GP and my first neuro were clueless. They may need you to educate them.

Has any one received an intravenous infusion of Haldol for NDPH? This was mentioned in an article in the journal Practical Neurology. It is being used by neurologists where my husband receives care.

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I have had migraine headaches since 2013 every day all day and have had no relief from the pain, and can't find a neurologist that will or can do anything about them. I will ask about the Arachnoid Cyst at my next visit in 4 months, but in the mean time I just suffer in pain every day.

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I have been dealing with a new daily persistent headache for five years now. I am 49 years old, have been to 5 neurologist's, have had 4 MRI's, and cerebral angiogram, 10 different migraine meds including two CGRP's.

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@dhramsey

I have been dealing with a new daily persistent headache for five years now. I am 49 years old, have been to 5 neurologist's, have had 4 MRI's, and cerebral angiogram, 10 different migraine meds including two CGRP's.

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Hi @dhramsey – welcome to Connect. I can't imagine how awful it would be to deal with a new daily persistent headache for as long as you have. I hope you and other members find some answers that help. I did a search using Google Scholar (https://scholar.google.com/) and found a few articles that may provide some useful information:

New Daily Persistent Headache and OnabotulinumtoxinA Therapy
https://journals.lww.com/clinicalneuropharm/Abstract/2019/01000/New_Daily_Persistent_Headache_and.1.aspx

An RCVS Spectrum Disorder? New Daily Persistent Headache Starting as a Single Thunderclap Headache (3 New Cases)
https://onlinelibrary.wiley.com/doi/abs/10.1111/head.13495

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@johnbishop

Hi @dhramsey – welcome to Connect. I can't imagine how awful it would be to deal with a new daily persistent headache for as long as you have. I hope you and other members find some answers that help. I did a search using Google Scholar (https://scholar.google.com/) and found a few articles that may provide some useful information:

New Daily Persistent Headache and OnabotulinumtoxinA Therapy
https://journals.lww.com/clinicalneuropharm/Abstract/2019/01000/New_Daily_Persistent_Headache_and.1.aspx

An RCVS Spectrum Disorder? New Daily Persistent Headache Starting as a Single Thunderclap Headache (3 New Cases)
https://onlinelibrary.wiley.com/doi/abs/10.1111/head.13495

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Thanks

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@johnbishop

Hi @dhramsey – welcome to Connect. I can't imagine how awful it would be to deal with a new daily persistent headache for as long as you have. I hope you and other members find some answers that help. I did a search using Google Scholar (https://scholar.google.com/) and found a few articles that may provide some useful information:

New Daily Persistent Headache and OnabotulinumtoxinA Therapy
https://journals.lww.com/clinicalneuropharm/Abstract/2019/01000/New_Daily_Persistent_Headache_and.1.aspx

An RCVS Spectrum Disorder? New Daily Persistent Headache Starting as a Single Thunderclap Headache (3 New Cases)
https://onlinelibrary.wiley.com/doi/abs/10.1111/head.13495

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Thanks, I have been receiving Botox for the past year. Dr. Rozen from your Jacksonville neuro group has by far the most research out there.

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@dhramsey

Thanks, I have been receiving Botox for the past year. Dr. Rozen from your Jacksonville neuro group has by far the most research out there.

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@dhramsey, how often do you have to get the botox treatments?

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Every 90 days , I may stop

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@dhramsey

Every 90 days , I may stop

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Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so next month. Have they been effective for you?

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@dhramsey I have been looking into Myofascial Release Therapy for some lower back pain but I haven't done it yet as I'm due to have a knee replacement done this Friday and don't want to start something else yet. I did a search and found that it may also help with new daily persistent headaches.

Myofascial Release for NDPH
https://paincareclinic.co.uk/pain/pain-conditions/new-daily-persistent-headache-ndph/

There is another discussion here on Connect that you and others with NDPH may be interested in joining.

> Groups > Neuropathy > Myofascial Release Therapy (MFR) for treating compression and pain
https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/

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@cici10

Hello. Interested to hear you've been receiving Botox injections. My husband is scheduled to do so next month. Have they been effective for you?

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They have not been effective. Insurance is also always an issue

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Thank you dhramsey. My husband's neurologist said a trial of 3 series of shots, spaced 90 days apart. After that no further Botox if no relief.

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@msb18

@quazar I am on 140mg Aimovig. I began to improve 4 days after the medication was administered. I am also experiencing side effects. I didn't experience them when I was on 70mg for 2 months but, I also had only 4 migraine-free days out of 60 days on 70mg. The 2 competitor meds – which both work on the CGRP itself rather than the receptor – are not known to have the constipation or muscle cramping produced by Aimovig. Emgality does have a problem in that Lupus patients taking a specific medication can't take Emgality because Emgality increases the toxicity of the Lupus medication. Because I have TMJ and nerve damage, the Aimovig muscle cramping can be quite debilitating. So, I'm trading migraine relief for intense nerve and TMJ pain. There is no rhyme or reason with regards to the side effects as they pertain to me; I haven't narrowed down a reason why some days I experience no cramping while other days it's mild and other days it's severe.

I had to request that Aimovig be added to my Formulary. The insurance company approved it as a Tier 4 medication. All 3 CGRP meds are priced at $6900/year out of pocket. But, I'm willing to bet that individual insurance plans won't cover all 3 OR won't cover them at the same rate. That would, effectively, make one medication more affordable to policy holders.

I think that the Aimovig side effects would be more tolerable for patients with no comorbid illnesses. Those with digestive issues, like gastroparesis, would probably have a difficult time staying on Aimovig. If I could convince my insurance company to cover Emgality, I think I'd switch next month.

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Have you tried Emgality? I haven't yet but plan to. I tried Amovig for one month and it did help reduce the frequency of the headaches but caused me severe nightmares. I received a sample of the Emgality last week but messed up with the syringes. I lost all of the medication before I could inject the needles.

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@cici10

Thank you dhramsey. My husband's neurologist said a trial of 3 series of shots, spaced 90 days apart. After that no further Botox if no relief.

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yes, I am going to discontinue. I have gone through 4 cycles, your husband, as we all know could respond. Hopefully, this is the case.

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@russy

Have you tried Emgality? I haven't yet but plan to. I tried Amovig for one month and it did help reduce the frequency of the headaches but caused me severe nightmares. I received a sample of the Emgality last week but messed up with the syringes. I lost all of the medication before I could inject the needles.

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I have tried Aimovig for NDPH, I had some side effects that my Emgality does not. I do get some relief from Emgality, and my energy level is much improved. I work 40-50 hours a week still.

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